Myelofibrosis

I joined this group to inform myself about PV which my husband was diagnosed with 8 years ago. His last haematology appt he was informed he now has Myelofibrosis . He has been complaining of bad pain in his leg and has no energy. In the last couple of weeks the pain has become extreme. His dr prescribed morphine patches low dosage . He was taken off hydro at last haematology appt a week ago. We are a bit unsure of the future and know thst he will have a change of drugs but not sure of what to expect. Also told he will need blood transfusion . My husband is 73. Any advice or suggestions to help him cope would be much appreciated . At moment he is just about able to walk about the house

7 Replies

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  • Hello Marian, sorry to hear about your husband not feeling well. I am assuming your husband has had a bone marrow biopsy? Ask the doctor about Jakavi/ruxolitinib. This is a Jak2 inhibitor that has helped many patients in the last few years - including myself. It helps especially with symptoms such as fatigue and bone pain, and it reduces the size of the spleen. Of course it depends on the overall picture, blood results, etc. Good luck!

  • Thank you for reply. He had biopsy early November which showed the beginning of MF. In last few weeks the pain has increased dramatically . The haematologist last week mentioned ruxolitinib so hopefully that is what he will get also blood transfusions .

  • hi i also have MF and used to have bone pain. then i got ruxolutinib (also known as jakafi) and the improvement in how i feel is stunning. you can get it on the nhs but only if u r high or intermediate risk as it costs <£42k pa.

    good luck and let us know how you get on

  • Thank you fir your reassurance ...

  • Hello Marian

    Unfortunately I have no knowledge of MF as I have ET. However, I just wanted to send you and your husband my best wishes and hope his consultant can make him feel more comfortable going forward.

    Angela

  • Hello Marian

    I am in the same boat as Angela and do not have much to offer with regards knowledge of MF but would also like to send my best wishes to you and your husband and hope that the future treatment plan helps with his condition.

    Richard

  • Thank you fir your best wishes. It's particularly difficult at moment as he needed morphine patches for pain . Hadn't been able to eat for 2 days and has been sleeping all the time (the drugs I think). I am trying to find a specialist MPN doctor as that seems to be advice from others on this forum. He is back at hospital on Friday so hopefully some answers then.

    Thank you again

    Marian

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